Updated Website
The website redesign was definitely the right decision. I didn't want to put another page up there to go on the top menu as it would get a bit too squashed up with the current design. So it was handy when I looked over the current pages I realised that one of the pages I had was on 'Writerers' which I haven't updated for years and is well out of date and in fact not entirely relevant. The only interesting items on it were the Flash Dogs website links, so I've copied those over to here rather than lose everything in one fell sweep which I may later regret.
I haven't checked yet whether these are all still live or not. But I will do over the weekend.
Mark A. King - Recent UK based novelist with 'Metropolitan Dreams'
Liz Hedgecock - Another UK novelist and novelleta.
Beth Deitchman - Yep, another US Flash Dog writerer from the lovely Luminous Creatures Press.
Emily June Street - California based noveller, including the Velocipede Races.
Casey Rose Frank - A freelance writerer and voracious readerer from the east coast of the US.
Tamara Rogers - Writing and Images from the wonderfully talented Flash Dogs cover artist.
Holly Geely - US based writer of novesl, novellas, and short story collections.
Steph Ellis - the prolific and wonderful Steph.
Tamara Shoemaker - fab writerer and wonderful editor from Virginia, US of A.
F.E. Clark - Great artist and writer from up in the north east of Scotland
Emily Livingstone - Fictionalist from New England
It also gives me room up top to put my 'Health' Section. Win win or something like that. Sorted.
I haven't checked yet whether these are all still live or not. But I will do over the weekend.
Flash Dog websites and blogs:
Mark A. King - Recent UK based novelist with 'Metropolitan Dreams'
Liz Hedgecock - Another UK novelist and novelleta.
Beth Deitchman - Yep, another US Flash Dog writerer from the lovely Luminous Creatures Press.
Emily June Street - California based noveller, including the Velocipede Races.
Casey Rose Frank - A freelance writerer and voracious readerer from the east coast of the US.
Tamara Rogers - Writing and Images from the wonderfully talented Flash Dogs cover artist.
Holly Geely - US based writer of novesl, novellas, and short story collections.
Steph Ellis - the prolific and wonderful Steph.
Tamara Shoemaker - fab writerer and wonderful editor from Virginia, US of A.
F.E. Clark - Great artist and writer from up in the north east of Scotland
Emily Livingstone - Fictionalist from New England
It also gives me room up top to put my 'Health' Section. Win win or something like that. Sorted.
Comments
Redesign Time. Probably.
Contemplating a wee redesign of the website. Nothing too major, and I’ll probably retain most things. But I’m conscious that I have been blogging about health related issues over the last few weeks. Depending on how things go for me with the MS this could continue to be a topic I feel I have to keep coming back to. But at the moment it is sandwiched with all the blogs about writing, music, beer, Liverpool, and even poetry.
The health stuff could be a mighty turn off for some people and if there is a run of blogs on it then other of my usual witterings could be hidden in the avalanche. Equally if people are interested in the MS stuff (don’t let me ever call it a journey) then they may not be interested in my latest beer experiences - and certainly not my singing. So to that end I think I will create a new Health section and do all the related blogging within that.
I think it makes sense - though not sure how quickly I can turn that around. Watch this space - or that space: who knows?
The health stuff could be a mighty turn off for some people and if there is a run of blogs on it then other of my usual witterings could be hidden in the avalanche. Equally if people are interested in the MS stuff (don’t let me ever call it a journey) then they may not be interested in my latest beer experiences - and certainly not my singing. So to that end I think I will create a new Health section and do all the related blogging within that.
I think it makes sense - though not sure how quickly I can turn that around. Watch this space - or that space: who knows?
Cool Club to Join: Vaccination #1
This morning I had my first COVID-19 jab: like a lot of people I know this week seems to be the week for getting jabbed. A few of my older mates, or those with other medical issues, have already been done, but this week so many of my mates, acquaintances, and Twitter buddies seem to have been marching around with one arm of their shirt up, whilst marching through doctors' surgeries and community centres up and down the country.
My vaccination place was just 3 miles away in Aintree Community Centre. I got up there in under 15 minutes and was in and out even quicker. The whole process was quick and seamless. I was told they were vaccinating 450 people there in the one day, which is pretty impressive for the wee place.
It was an Astra-Zeneca jab of course. I think most of them are at the moment. After all the bloods taken in the last couple of weeks - and the COVID tests up the nose & through to the back of my brain - the jab was nothing. Not had any issues with pain or flu type issues yet, but guess it’s only 8 hours ago and that’d be tomorrow if at all. Given my other problems at the moment a bit of temporary flu would be neither here nor there. That said, I’d prefer the issue to bypass me if it’s feeling kind.
Next up for me will be the second dose, which will be due some time over the next twelve weeks - which means by early June. In some ways that doesn’t seem that far off. Time is playing some mighty strange games at the moment though.
Good luck to those of you who haven’t had it yet. Hope you get it soon (apart from those idiots who were celebrating Paddy’s Day in Sefton Park yesterday. Fucking idiots, the lot of them).
My vaccination place was just 3 miles away in Aintree Community Centre. I got up there in under 15 minutes and was in and out even quicker. The whole process was quick and seamless. I was told they were vaccinating 450 people there in the one day, which is pretty impressive for the wee place.
It was an Astra-Zeneca jab of course. I think most of them are at the moment. After all the bloods taken in the last couple of weeks - and the COVID tests up the nose & through to the back of my brain - the jab was nothing. Not had any issues with pain or flu type issues yet, but guess it’s only 8 hours ago and that’d be tomorrow if at all. Given my other problems at the moment a bit of temporary flu would be neither here nor there. That said, I’d prefer the issue to bypass me if it’s feeling kind.
Next up for me will be the second dose, which will be due some time over the next twelve weeks - which means by early June. In some ways that doesn’t seem that far off. Time is playing some mighty strange games at the moment though.
Good luck to those of you who haven’t had it yet. Hope you get it soon (apart from those idiots who were celebrating Paddy’s Day in Sefton Park yesterday. Fucking idiots, the lot of them).
Walk into Town: Onwards Downhill
Since my diagnosis of MS less than two weeks ago I have been conscious of my movement and the requirement to keep some miles in those legs to keep them going - even if I've nothing in particular to do. My standard aim for those pesky 'steps' prior to MS was 8000 a day. With work I was always doing between 12 and 17k steps, and on days off in these Covid days a lot lower (no pub crawls to walk). The average though would be well over 10k. I'm going to keep the aim at 8000 now and I don't feel any reason to change it. Indeed it may be more important than ever.
I decided to go on a walk yesterday with the aim of exceeding 10k and I did easily - finishing on 15k. The main thing was a long walk into Liverpool from home taking in Anfield Cemetery, Anfield Stadium and the walk down to the Adephi via Everton Valley Park. The walk was about 5 miles.
The walk took me along the East Lancs and Walton Road before I ducked into Anfield Cemetery, as it's always nice to walk through where all the dead people are, and then on past Anfield. I was a season ticket holder back in the 1980s and in more recent times a Priority Ticket Scheme member, but I haven't gone to a match at Anfield since they built the fantastic new stand. God it's enormous.
After Anfield I decided to walk on, trying to get some more miles in. Thought I'd go to Everton Valley Park for the vista over Liverpool. The skyline along the Mersey looks great from there. In the end I decided it was al downhill from there into town so I'd continue and get the 17 or 19 back. It was a good call. Met a nice bloke walking his dog who chased after me to tell me my laces were undone on one of my trainers. I couldn't hear him with my headphones on. I thanked him, as there was no way with my current lack of feelings in my legs and feet I'd ever have felt them being loose. Got chatting to him, and despite his Everton hat he was a sound bloke. Explained about my numbness and he told me about his son dying at 19 and daughter at 24. Bloody hell. There is always someone else worse off out there isn't there. Had a good chat about all things cheerful, and football (which is a mixed bag for both of us at the moment).
Town was an absolute mess with so many roadworks around the centre. Hope they are timed to be sorted by the time everything has opened up - if not it is more disaster for the companies that have been shut for months. Sod's Law and bad planning dictates that the works won't be completed in the next couple of weeks. I saw hardly a workman anywhere along the hundreds of metres I walked past. Fingers crossed though.
Didn't fancy walking back - it's uphill. So hopped a No.19 and I was sorted. It was a nice day and a good walk. It's good to know I can walk five miles with no ill effects. Though my feet were sore.
Onwards and upwards.
I decided to go on a walk yesterday with the aim of exceeding 10k and I did easily - finishing on 15k. The main thing was a long walk into Liverpool from home taking in Anfield Cemetery, Anfield Stadium and the walk down to the Adephi via Everton Valley Park. The walk was about 5 miles.
The walk took me along the East Lancs and Walton Road before I ducked into Anfield Cemetery, as it's always nice to walk through where all the dead people are, and then on past Anfield. I was a season ticket holder back in the 1980s and in more recent times a Priority Ticket Scheme member, but I haven't gone to a match at Anfield since they built the fantastic new stand. God it's enormous.
After Anfield I decided to walk on, trying to get some more miles in. Thought I'd go to Everton Valley Park for the vista over Liverpool. The skyline along the Mersey looks great from there. In the end I decided it was al downhill from there into town so I'd continue and get the 17 or 19 back. It was a good call. Met a nice bloke walking his dog who chased after me to tell me my laces were undone on one of my trainers. I couldn't hear him with my headphones on. I thanked him, as there was no way with my current lack of feelings in my legs and feet I'd ever have felt them being loose. Got chatting to him, and despite his Everton hat he was a sound bloke. Explained about my numbness and he told me about his son dying at 19 and daughter at 24. Bloody hell. There is always someone else worse off out there isn't there. Had a good chat about all things cheerful, and football (which is a mixed bag for both of us at the moment).
Town was an absolute mess with so many roadworks around the centre. Hope they are timed to be sorted by the time everything has opened up - if not it is more disaster for the companies that have been shut for months. Sod's Law and bad planning dictates that the works won't be completed in the next couple of weeks. I saw hardly a workman anywhere along the hundreds of metres I walked past. Fingers crossed though.
Didn't fancy walking back - it's uphill. So hopped a No.19 and I was sorted. It was a nice day and a good walk. It's good to know I can walk five miles with no ill effects. Though my feet were sore.
Onwards and upwards.
Walking and All That
A week yesterday I was told I had MS and at this time a week today I was leaving the Walton Centre after the excitement of a Lumbar Puncture. It's been a funny week or two. I've had one non-funny turn of blind panic the other night, as described in my last blog Paranoid Andrew, but otherwise I've been okay.
Getting back to putting some distance in my legs, sometimes only walking up and down the rooms of the house. I walked 3500 steps on Wednesday and then aimed to double that yesterday (which I did), which is nothing compared to what I'm doing when at work - generally at work I do between 12 and 17k steps. At the moment I am assuming I'll be back at work by the end of next week if I continue to get my walking numbers up. If the current outbreak or episode or whatever such a thing is called remains as 'just' being some numbness in the legs and feet then I think that is doable. Fingers and toes crossed - though I won't be able to do that with my toes (or at least I wouldn't notice).
Expecting to hear from the Walton Centre about an appointment with the Doctor next week to go through the LP results and what will happen from then on.
This week then, in addition to walking each day, I'm looking at doing a (very) little DIY and some writing. Need to get my spare room sorted better for working in and/or playing the guitar.
Onwards and upwards.
Oh, and I did buy a pair of slippers. My bad.
Getting back to putting some distance in my legs, sometimes only walking up and down the rooms of the house. I walked 3500 steps on Wednesday and then aimed to double that yesterday (which I did), which is nothing compared to what I'm doing when at work - generally at work I do between 12 and 17k steps. At the moment I am assuming I'll be back at work by the end of next week if I continue to get my walking numbers up. If the current outbreak or episode or whatever such a thing is called remains as 'just' being some numbness in the legs and feet then I think that is doable. Fingers and toes crossed - though I won't be able to do that with my toes (or at least I wouldn't notice).
Expecting to hear from the Walton Centre about an appointment with the Doctor next week to go through the LP results and what will happen from then on.
This week then, in addition to walking each day, I'm looking at doing a (very) little DIY and some writing. Need to get my spare room sorted better for working in and/or playing the guitar.
Onwards and upwards.
Oh, and I did buy a pair of slippers. My bad.
Paranoid Andrew
09/03/21 13:27 Filed in: Health
Didn’t have a good night last night. My legs had stiffened up significantly over the last couple of days and got more fatigued. It feels like I’ve got tight knee supports on though I’ve got nothing around them. A couple of spots around the waist have now felt the same. Nerves passing wrong messages again.
The night hit a low point when I thought I may be in the house a lot more in the future and could therefore do with a pair of slippers. Slippers!! My god.
With the different feelings in the legs changing quite quickly over the last few days my paranoia was briefly full on last night that it would continue on a rapid spiral and by the middle of the week I wouldn’t be able to walk at all. A little scary. Ok, more than.
On reflection, which included some early morning reading of the NHS website, I’ve kinda dispelled that now. Yeah of course things could get worse, but not that bad. Well not by Wednesday anyway.
I’m trying not to look at too much stuff out there on the subject. Yesterday afternoon I made the mistake of looking at a video made for MS Awareness month (or week, I’m not sure). It was a highly polished American production and showed various sufferers shouting out how they didn’t let MS win, they all had pretty severe issues and whilst I was very happy for them, the whole shebang did nothing for uplifting me. It seemed simply to be ‘it’s bloody awful, but look at me. I’m happy!’ - and didn’t say anything about the range or progression of the disease for most people. I think it was looking at this that got to me later in the evening - so much for awareness, or positivity.
But it’s so variable and difficult to predict there’s not much point in me worrying about where I’ll be in week, month or year one. Or how damn happy it will make me.
I’m glad I looked at the NHS website this morning. It’s made me feel a bit better.
Again I’m gonna try to continue to avoid general research until I know MY situation, hopefully following my follow up at the Walton Centre. Any future research will be totally UK based - I don’t want to see a single cheerful American telling me how good they feel despite the awfulness. I dare say I’ll have good days and bad days, and I’m expecting most to be good. But I won’t be starring in any glossy videos telling you about it.
______
PS it's always Andy, but Andrew scanned better for the purposes of the title.
The night hit a low point when I thought I may be in the house a lot more in the future and could therefore do with a pair of slippers. Slippers!! My god.
With the different feelings in the legs changing quite quickly over the last few days my paranoia was briefly full on last night that it would continue on a rapid spiral and by the middle of the week I wouldn’t be able to walk at all. A little scary. Ok, more than.
On reflection, which included some early morning reading of the NHS website, I’ve kinda dispelled that now. Yeah of course things could get worse, but not that bad. Well not by Wednesday anyway.
I’m trying not to look at too much stuff out there on the subject. Yesterday afternoon I made the mistake of looking at a video made for MS Awareness month (or week, I’m not sure). It was a highly polished American production and showed various sufferers shouting out how they didn’t let MS win, they all had pretty severe issues and whilst I was very happy for them, the whole shebang did nothing for uplifting me. It seemed simply to be ‘it’s bloody awful, but look at me. I’m happy!’ - and didn’t say anything about the range or progression of the disease for most people. I think it was looking at this that got to me later in the evening - so much for awareness, or positivity.
But it’s so variable and difficult to predict there’s not much point in me worrying about where I’ll be in week, month or year one. Or how damn happy it will make me.
I’m glad I looked at the NHS website this morning. It’s made me feel a bit better.
Again I’m gonna try to continue to avoid general research until I know MY situation, hopefully following my follow up at the Walton Centre. Any future research will be totally UK based - I don’t want to see a single cheerful American telling me how good they feel despite the awfulness. I dare say I’ll have good days and bad days, and I’m expecting most to be good. But I won’t be starring in any glossy videos telling you about it.
______
PS it's always Andy, but Andrew scanned better for the purposes of the title.
Boss People, Good Food - Don't Mention the Coffee
06/03/21 16:06 Filed in: Health
This week I was in Fazakerley Hospital for two nights/three days, and then in The Walton Centre as an in-patient. I was looked at by some great doctors and nurses. The nurse who looked at me at A&E was particularly excellent. The Covid brain skimmer was eye wateringly scary, but efficient. Even the food and drink was really good: with the exception being the "coffee" - and maybe the portion size ;-).
Fazakerley Hospital - the return to the 9th Floor
The nurse who performed my Lumbar Puncture in the Walton Centre was brilliant, and the initial involvement from the Centre has been really good - and I'm sure that will continue.
Met a really nice woman who worked at Fazakerley and the Royal who has written a book, due out soon, on her experience with breast cancer. Had a nice chat with her. I'll definitely be buying her book when it comes out; 'Bald, Brave & Bloody Beautiful' by Danielle McDermott. And better still she's related to a former Liverpool great too: Terry McDermott. Cool.
The Walton Centre
The biggest negative issues I had was; 1) sleep, which was incredibly difficult due to myriad issues with other patients and the noise from a variety of machines, and 2) my phone - I brought multiple plugs and a full battery pack with me; but I picked up the wrong cable for the phone. A true schoolboy error on my part. Can't really complain about either of these things; particularly my schoolboy error. The wrong cable mistake will never ever happen again. Hopefully.
Not sure whether I'll be writing more than the few blog things about this new part of my life, but maybe I'll get some new storylines for some fictional stories. Hopefully this blog will continue to be much about music, writing and beer rather than becoming a health log. That's my intention anyway; that said if you want to read about this last, very eventful, week then look no further that the previous post.
- PS I'm hoping not to have a reason to write another 'health' only blog for the next week or so. Fingers crossed.
Fazakerley Hospital - the return to the 9th Floor
The nurse who performed my Lumbar Puncture in the Walton Centre was brilliant, and the initial involvement from the Centre has been really good - and I'm sure that will continue.
Met a really nice woman who worked at Fazakerley and the Royal who has written a book, due out soon, on her experience with breast cancer. Had a nice chat with her. I'll definitely be buying her book when it comes out; 'Bald, Brave & Bloody Beautiful' by Danielle McDermott. And better still she's related to a former Liverpool great too: Terry McDermott. Cool.
The Walton Centre
The biggest negative issues I had was; 1) sleep, which was incredibly difficult due to myriad issues with other patients and the noise from a variety of machines, and 2) my phone - I brought multiple plugs and a full battery pack with me; but I picked up the wrong cable for the phone. A true schoolboy error on my part. Can't really complain about either of these things; particularly my schoolboy error. The wrong cable mistake will never ever happen again. Hopefully.
Not sure whether I'll be writing more than the few blog things about this new part of my life, but maybe I'll get some new storylines for some fictional stories. Hopefully this blog will continue to be much about music, writing and beer rather than becoming a health log. That's my intention anyway; that said if you want to read about this last, very eventful, week then look no further that the previous post.
- PS I'm hoping not to have a reason to write another 'health' only blog for the next week or so. Fingers crossed.
Tests and Tests and M&S
06/03/21 13:53 Filed in: Health
After four days of either being in hospital, or going back for tests, I’ve got a doctor free day. Yippee! So what’s been happening folks?
This week has been a bit of a kicker. After two weeks of numbness and tingling in my legs and feet the only test result I had come in was a low folate in a blood sample last Friday. By Monday I had not been able to speak to my GP so did not know whether this was supposed to be the reason for the issues with my legs, or something else completely unconnected. On Tuesday I tried again with the GP, on the phone from 8:30am but didn't get through until 9:30am - of course the doctors were all fully booked up for calls or actual appointments by then. Sometimes calling for a GP appointment can be as exciting and as fruitless as trying to get a festival ticket. The receptionist suggested that I try the eConnect method, where you fill in an online form and they reply by email to your query. Unfortunately when I tried filling in the form it wouldn't let me submit as it said that it said my issue was urgent and I must call 111 (it also does not send the information on to the GP at that point).
On 111 and after twenty minutes or more chatting to them it got to a point where they said they would call me an ambulance. Eek! Meanwhile I had the plumber working on my pipes (not a euphemism). The woman on 111 then told me the waiting time for an ambulance (which I was confident I didn’t need) was hours. She suggested getting a neighbour to take me to A&E (a neighbour during a pandemic?), and told me not to get a bus (it’s just two stops to the hospital).
Needless to say, after the plumber finished with my pipes (still not a euphemism), I packed a wee bag (again not) - just in case I’d have to stay over - and headed up to A&E... by bus.
After a long time looking at me - scratching and not scratching my legs, and taking multiple bloods - it was time to get a Covid test. I think she took a piece of my brain out with the sampling. It was the quick test: Negative. After the nurse consulted with a doctor or two it was decided I needed an MRI (which I was supposed to be getting after the Xmas issue and was sure would answer some questions). It couldn’t be done until the following day though, so I needed an overnight (if I’d not stayed in I was told they would be unable to put me forward for an MRI for quite a few weeks). As I was straying in I required a second (laboratory) Covid test. so another lump of my brain was pulled out though my nose.
I've found there's wifi (though my phone is dead. REM: take right cable next time)
Oh god, I’m rambling, and only a few hours into my three days in the hospital. At this rate it’d take ages to go through my three days.
Let’s rush it out then: on Wednesday evening I was subjected to the horrific experience of an MRI scan of my head and then my spine. Loud doesn’t come close. I think it was circa 50 minutes of hell. At one point I became worried about the titanium rod in my right arm being at least part steel and therefore getting ripped out of my arm. Scary. And did I say it was loud? It was VERY LOUD!
Because it was late in evening of course I wouldn’t get the feedback until Thursday. So it was another night in. I was worried about a brain tumour or something. I mean my legs are doing what I want them to. If I want to move either leg or foot it’ll go where I tell it. They just doesn’t send the clear feedback on to my brain as to how they feels. Something has cut through a cable and is disrupting clear communication.
I didn’t get the MRI results until Thursday afternoon (though before the report came in a doctor tried to mislead me in the morning. I don't now why he came to talk to me before the report was out!? - I’ll leave that there though). The neurologist, Dr Mills and two of his young colleagues, came to talk with me: it was almost a Gregory House four man team.
Long story short, the diagnosis: MS. Or, as I’ve mistakenly said a couple of times, M&S.
They suggested that they could do a lumbar puncture (or Spinal Tap if you prefer) the next day if I was up for it. As that could firm up the diagnosis: unfortunately there is no simple 100% test for the disease. It is a combination of clinical diagnosis with probability analysis and fingers to the wind. Or something like that. With the LP they take spinal fluid and can look at what’s in it, including viruses, macrobac, and lots of bits & bobs that can act as indicators for MS. In the meantime there was no need to remain in hospital thankfully.
At the bus stop on the way for my LP
So I got home on Thursday evening - so, so nice after two nights in hospital (how does anyone get any sleep there?). Got the call on Friday at 9:30am to come in to the Walton Centre for 11am for the LP. I was in and out in no time. I actually left home at 10:30 and was back having a coffee by 12:30. I’d been a bit nervous about the whole syringe in the back procedure, after seeing far too many bad examples of it on the telly. But the LP was undertaken without me feeling a thing; I've given bloods which have been more painful, and I've never had an issue with bloods (ie. that ain't painful either). The nurse was obviously bloody good at Lumbar Punctures - and the patient was obviously amazing too.
M&S: not good news at all. But ultimately it is better to know than not to know - I wish I could have had the MRI earlier: I mean I don’t need to worry about a brain tumour now, do I?
I’ve got a big learning curve. MS is an odd disease. It is one of those auto immune things where your body attacks itself. The MRI showed various bright points on my spine and in my brain where there was inflammation. These are spots where the nerves are being attacked and stripped of some of the myelin coating. It is these damaged nerves that stop doing their job and sending my brain bits of handy information (like is it hot or cold, hard or soft, sharp or smooth?). It's pretty difficult to know how things will progress and what treatments can work for different aspects of it. I mean once this episode is over and I'm dancing again (ok, not dancing) it could be months, or longer still, until a following flare up. And next time it may not be my legs. It could also be very soon. It could be something and nothing, or something worser. Basically the way it impacts seems totally random.
I'm quite ancient for the diagnosis: normally it first shows up in people between the age of 20 and 40. Maybe I've had it for decades and it hasn't done anything to me until now? Maybe I've been lucky in that respect. Of all weeks, what a week to get the MS diagnosis. Yup, March is MS Awareness Month. Well I guess I'm aware now.
The crazy thing is I actually feel very well - and long may that continue. It's going to be a case of taking each day as it comes and seeing what M&S has in store for me. This is not just numbness, it's M&S numbness. This is not just freaky, it's M&S freaky. For now though I have to wait a couple of weeks until I hear back from Dr Mills on the findings from the LP. The Walton Centre have already been in touch to say their MS nurses are there for me if I need to talk to them at all. It was nice and reassuring to hear from them without me calling them.
Anyway, onwards and upwards. And I really can't wait for the first real ale pub crawl of 2021.
This week has been a bit of a kicker. After two weeks of numbness and tingling in my legs and feet the only test result I had come in was a low folate in a blood sample last Friday. By Monday I had not been able to speak to my GP so did not know whether this was supposed to be the reason for the issues with my legs, or something else completely unconnected. On Tuesday I tried again with the GP, on the phone from 8:30am but didn't get through until 9:30am - of course the doctors were all fully booked up for calls or actual appointments by then. Sometimes calling for a GP appointment can be as exciting and as fruitless as trying to get a festival ticket. The receptionist suggested that I try the eConnect method, where you fill in an online form and they reply by email to your query. Unfortunately when I tried filling in the form it wouldn't let me submit as it said that it said my issue was urgent and I must call 111 (it also does not send the information on to the GP at that point).
On 111 and after twenty minutes or more chatting to them it got to a point where they said they would call me an ambulance. Eek! Meanwhile I had the plumber working on my pipes (not a euphemism). The woman on 111 then told me the waiting time for an ambulance (which I was confident I didn’t need) was hours. She suggested getting a neighbour to take me to A&E (a neighbour during a pandemic?), and told me not to get a bus (it’s just two stops to the hospital).
Needless to say, after the plumber finished with my pipes (still not a euphemism), I packed a wee bag (again not) - just in case I’d have to stay over - and headed up to A&E... by bus.
After a long time looking at me - scratching and not scratching my legs, and taking multiple bloods - it was time to get a Covid test. I think she took a piece of my brain out with the sampling. It was the quick test: Negative. After the nurse consulted with a doctor or two it was decided I needed an MRI (which I was supposed to be getting after the Xmas issue and was sure would answer some questions). It couldn’t be done until the following day though, so I needed an overnight (if I’d not stayed in I was told they would be unable to put me forward for an MRI for quite a few weeks). As I was straying in I required a second (laboratory) Covid test. so another lump of my brain was pulled out though my nose.
I've found there's wifi (though my phone is dead. REM: take right cable next time)
Oh god, I’m rambling, and only a few hours into my three days in the hospital. At this rate it’d take ages to go through my three days.
Let’s rush it out then: on Wednesday evening I was subjected to the horrific experience of an MRI scan of my head and then my spine. Loud doesn’t come close. I think it was circa 50 minutes of hell. At one point I became worried about the titanium rod in my right arm being at least part steel and therefore getting ripped out of my arm. Scary. And did I say it was loud? It was VERY LOUD!
Because it was late in evening of course I wouldn’t get the feedback until Thursday. So it was another night in. I was worried about a brain tumour or something. I mean my legs are doing what I want them to. If I want to move either leg or foot it’ll go where I tell it. They just doesn’t send the clear feedback on to my brain as to how they feels. Something has cut through a cable and is disrupting clear communication.
I didn’t get the MRI results until Thursday afternoon (though before the report came in a doctor tried to mislead me in the morning. I don't now why he came to talk to me before the report was out!? - I’ll leave that there though). The neurologist, Dr Mills and two of his young colleagues, came to talk with me: it was almost a Gregory House four man team.
Long story short, the diagnosis: MS. Or, as I’ve mistakenly said a couple of times, M&S.
They suggested that they could do a lumbar puncture (or Spinal Tap if you prefer) the next day if I was up for it. As that could firm up the diagnosis: unfortunately there is no simple 100% test for the disease. It is a combination of clinical diagnosis with probability analysis and fingers to the wind. Or something like that. With the LP they take spinal fluid and can look at what’s in it, including viruses, macrobac, and lots of bits & bobs that can act as indicators for MS. In the meantime there was no need to remain in hospital thankfully.
At the bus stop on the way for my LP
So I got home on Thursday evening - so, so nice after two nights in hospital (how does anyone get any sleep there?). Got the call on Friday at 9:30am to come in to the Walton Centre for 11am for the LP. I was in and out in no time. I actually left home at 10:30 and was back having a coffee by 12:30. I’d been a bit nervous about the whole syringe in the back procedure, after seeing far too many bad examples of it on the telly. But the LP was undertaken without me feeling a thing; I've given bloods which have been more painful, and I've never had an issue with bloods (ie. that ain't painful either). The nurse was obviously bloody good at Lumbar Punctures - and the patient was obviously amazing too.
M&S: not good news at all. But ultimately it is better to know than not to know - I wish I could have had the MRI earlier: I mean I don’t need to worry about a brain tumour now, do I?
I’ve got a big learning curve. MS is an odd disease. It is one of those auto immune things where your body attacks itself. The MRI showed various bright points on my spine and in my brain where there was inflammation. These are spots where the nerves are being attacked and stripped of some of the myelin coating. It is these damaged nerves that stop doing their job and sending my brain bits of handy information (like is it hot or cold, hard or soft, sharp or smooth?). It's pretty difficult to know how things will progress and what treatments can work for different aspects of it. I mean once this episode is over and I'm dancing again (ok, not dancing) it could be months, or longer still, until a following flare up. And next time it may not be my legs. It could also be very soon. It could be something and nothing, or something worser. Basically the way it impacts seems totally random.
I'm quite ancient for the diagnosis: normally it first shows up in people between the age of 20 and 40. Maybe I've had it for decades and it hasn't done anything to me until now? Maybe I've been lucky in that respect. Of all weeks, what a week to get the MS diagnosis. Yup, March is MS Awareness Month. Well I guess I'm aware now.
The crazy thing is I actually feel very well - and long may that continue. It's going to be a case of taking each day as it comes and seeing what M&S has in store for me. This is not just numbness, it's M&S numbness. This is not just freaky, it's M&S freaky. For now though I have to wait a couple of weeks until I hear back from Dr Mills on the findings from the LP. The Walton Centre have already been in touch to say their MS nurses are there for me if I need to talk to them at all. It was nice and reassuring to hear from them without me calling them.
Anyway, onwards and upwards. And I really can't wait for the first real ale pub crawl of 2021.
Another Bloody Cold and Buzzy Week
28/02/21 17:57 Filed in: Health
This week I've been kind of waiting to recover from whatever I am suffering from - or maybe have it identified so it can be dealt with. Was hoping to get at least a date for the MRI, but there is no sign of that yet. The nurse who volunteered to take my bloods did so on Tuesday, which was great - it wouldn't have been taken until next week otherwise, which would have pushed things back another week, if I'd had to wait for sampling from one of the blood centres.
The taking of the bloods was fun: in that she struggled to get a vein and had to go for a second attempt. When I had tests at the start of the year the nurse commented at how easy it was to take the bloods. I think it has to be something to do with my sudden bout of everything being 'unusual'. Hoped that the results would be sorted by Thursday or Friday. As it was whilst I was chasing the results by phone on Friday afternoon the doctor, who was off, sent me a text as the the bloods had come through. Apparently they showed I was deficient in folate. I won't know until I see the doctor how likely it is to be the reason for my current issues or a side show discovered whilst investigating it. We shall see.
The fact that my nerves are fooked from my waist down to my toes - and that hasn't changed in the last week - seems a bit over the top compared to some of the typical symptoms of folate deficiency. As it is the feelings down both legs on all sides are messed up. The feet have strong pins and needles now and it is less like walking on soft mattresses when I am out for a stretch and more like walking on broken mattresses. Other than that had a bit of dizziness but nothing major. Of course that may have been something and nothing, now every little thing I feel comes with a 'is it a symptom' question. I'm also wondering if I've had weight loss or not. I don't weigh myself so I have no records to follow - all I know is my jeans are very loose. But that may be because I'm around the house without a belt on more. Maybe I should take some weight measurements and see what follows.
Been taking the folate pills since Friday. Not sure how quickly that will do anything, or indeed if it will do anything significant anyway.
For now I've got to see if I can get to see the GP early this week to discuss. I'm not sure that the folate deficiency is the cause of my current issues. I mean it is not that unusual an issue and yet the GP and the neurologist both thought the symptoms were very unusual - and looking at the list of typical symptoms of a folate deficiency:
…well I don't have a single one of these.
I need to cross my fingers that the MRI can get sorted so that it can do its job in looking for other internal issues. Fingers crossed for the MRI soon. In the meantime it would be nice to simply wake up with the legs feeling good and everything to have moved on as if by magic.
The taking of the bloods was fun: in that she struggled to get a vein and had to go for a second attempt. When I had tests at the start of the year the nurse commented at how easy it was to take the bloods. I think it has to be something to do with my sudden bout of everything being 'unusual'. Hoped that the results would be sorted by Thursday or Friday. As it was whilst I was chasing the results by phone on Friday afternoon the doctor, who was off, sent me a text as the the bloods had come through. Apparently they showed I was deficient in folate. I won't know until I see the doctor how likely it is to be the reason for my current issues or a side show discovered whilst investigating it. We shall see.
The fact that my nerves are fooked from my waist down to my toes - and that hasn't changed in the last week - seems a bit over the top compared to some of the typical symptoms of folate deficiency. As it is the feelings down both legs on all sides are messed up. The feet have strong pins and needles now and it is less like walking on soft mattresses when I am out for a stretch and more like walking on broken mattresses. Other than that had a bit of dizziness but nothing major. Of course that may have been something and nothing, now every little thing I feel comes with a 'is it a symptom' question. I'm also wondering if I've had weight loss or not. I don't weigh myself so I have no records to follow - all I know is my jeans are very loose. But that may be because I'm around the house without a belt on more. Maybe I should take some weight measurements and see what follows.
Been taking the folate pills since Friday. Not sure how quickly that will do anything, or indeed if it will do anything significant anyway.
For now I've got to see if I can get to see the GP early this week to discuss. I'm not sure that the folate deficiency is the cause of my current issues. I mean it is not that unusual an issue and yet the GP and the neurologist both thought the symptoms were very unusual - and looking at the list of typical symptoms of a folate deficiency:
- weakness
- fatigue
- trouble concentrating (or something like that)
- headache
- bloody irritability
- heart palpitations
- sores on the tongue or mouth
- a change in colour of skin, hair or fingernails (I may be a bit greyer?)
- shortness of breath.
…well I don't have a single one of these.
I need to cross my fingers that the MRI can get sorted so that it can do its job in looking for other internal issues. Fingers crossed for the MRI soon. In the meantime it would be nice to simply wake up with the legs feeling good and everything to have moved on as if by magic.
The Keys & Future Moths
24/02/21 15:43 Filed in: flash fiction | mid week flash
This week's Mid Week Flash (188) is up and had this photo of two beautiful ornate keys. As ever not sure where my story came from but it came anyway - check it out here. And if you want to read others, or have a go yourself, then take yourself over to Miranda's website.
Now I just need to get on and finish the story I started from last week's prompt (below). Maybe later…
Now I just need to get on and finish the story I started from last week's prompt (below). Maybe later…